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Speaking Up: As Patients, As Consumers

When a patient has a bad reaction to a prescription drug, that’s an adverse event (AE). Those should be reported to the FDA, and healthcare professionals are required to – not only doctors and nurses, but pharmacists and pharmaceutical companies.

New data (2006, but newly published) shows that the number of AE’s reported by the consumers themselves has surpassed the number reported by doctors.

FDANews suggests it’s because people are more aware of drug-safety issues (after highly publicized problems with drugs like Avandia and Vioxx). Ed and John seem to agree. They also both point out that while the other rates of increase are pretty steady, the rate of consumer reports is pretty much skyrocketing. And John notes that the FDA, post-Vioxx, made it a lot easier for people to submit AE’s online.

I’m sure news about adverse events makes people more alert to the possibility that they could have a bad reaction to their medicine – and I think the ease of reporting helps a lot – but I actually think it’s bigger than both of those.

John points out that pharmaceutical companies don’t seem to be submitting a lot more AE reports, despite the fear that Web 2.0 outreach efforts would cause patients to tell them about AE’s and require a lot of expensive, time-consuming new reporting procedures to be put into place. It doesn’t seem to be the case. And that fits my theory. We’re getting smarter. We know that the company probaby won’t be our fastest solution there.

My thought is, Web 2.0 has made us all a lot more personally responsible for our lives as consumers. Whether it’s looking up restaurants, comparing shoes, checking out vacation destinations, researching the condition you’ve just been diagnosed with – we find out what experts and peers and strangers have to say. Just about everybody does it now, and just about nobody did a decade ago.

If you went to the doctor in 1998, would you have rushed off to the library on your way home to yank out the Merck Manual? But now, there’s WebMD, there’s Medline, there’s even Wikipedia.

That we have this ability (and that it’s only getting easier) shifts our mindset completely. We are far less likely to accept things, far more likely to know when something happens that we shouldn’t accept, and far more able to take action when it does.